Law and Health: due process and civil society

About

LAW AND HEALTH – Valerie Eliot Smith

My background

I am a British barrister. I was called to the Bar of England and Wales in 1987. My areas of interest are the law, health and media relations. My legal expertise is in the areas of law relating to media (including defamation), cyberspace, human rights, data protection/privacy, freedom of information, open justice and intellectual property. I practised as a criminal lawyer for ten years.

My background also includes experience in media relations, journalism, dispute resolution, psychotherapy and human resources. My first degree was in English Literature, in 1977, from the University of London. My primary education took place mostly in Australia.

I have lived with the complex, disabling, multi-systemic, neuro-immune disease myalgic encephalomyelitis or “ME” since 1981. ME is sometimes referred to (incorrectly – see below in “Definition of ME“) as “chronic fatigue syndrome” or “CFS”. I continued to work, study and practise as a lawyer until 2000 when I was further disabled by additional health problems. I have been unable to work in any formal capacity since then.

I completed the first year of training as a psychotherapist in 2002 but became too ill to continue the full course. I am a Visiting Scholar at the Centre for Commercial Law Studies at Queen Mary, University of London, in order to extend my academic background. However, I am unable to complete any further formal qualifications as I am too ill to fulfil the research, writing and teaching requirements.

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Independent status

The views expressed in this blog are my own. I am not affiliated to any other group or professional body relating to ME or CFS issues. I receive no payment for any of my ME work and I cover all costs incurred myself.

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Definition of ME

For clarification purposes: the definition of ME which I prefer is contained within the 2011International Consensus Criteria (the “ME-ICC”). While I have no wish to exclude those who are diagnosed under other criteria, for me the ME-ICC is the most appropriate definition we have so far, both for clinical and research purposes.

As a result of nearly four decades of experience, observation and research, I regard chronic fatigue syndrome as a condition which is separate from ME. The terms “CFS/ME” and “ME/CFS” are frequently used interchangeably with ME, CFS and with each other, as well as a number of other names. This range of terminology is both confusing and imprecise.

Purpose of this blog

I originally started this blog in order to publish my work on the so-called “Secret Files on ME“. However, since then, I have developed it into a broader remit (see “CATEGORIES” in sidebar). Because of my health, I am not able to post nearly as often as I would like.

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Comments

I welcome comments and my policy is simple: please keep it clear, relevant and lawful. All comments are moderated so it may take a little time before they appear. Personal attacks on anyone are not welcome and, in extremis, may not get through moderation. I will respond as and when I can, depending on my own state of health at the time.

Acknowledgment

If you are making use of information or documents from this blog, I would appreciate it if you would quote the source and credit my work.

Disclaimer

Nothing in this blog should be taken as either legal or medical advice. While I strive to ensure that everything I say is accurate and not misleading, we all make mistakes. If you think I’ve got something wrong then please let me know.

Contact details

I can be contacted via my academic email address at v.eliot-smith@qmul.ac.uk You can also send a tweet/direct message via Twitter @SnakeTempleGirl or private message on Facebook (name as it appears above) or through my Facebook page Walking Like an Egyptian.

No worries & thankyou for the wishes, i intervened on behalf of Professor Hooper via my MP Mike Hancock over the classification of ME dispute at the DWP which lead to the Health Minister stating ME is a neurological disorder as stated by the DOH & not a Mental Health disorder.
I have severe ME though much better than I was.
Any help you need please don’t hesitate to ask, kind regards, Derek

Just wanted to add my thank you Valerie and also to say hope you have a better spell soon – can get on with the things you want to do. This illness certainly forces us to consider priorities – and to disappear every so often! Been ill myself since December 1986 and have had to dip in & out of campaigning & support work as health fluctuates.

Thank you for your comment, Liz. Yes – it’s so frustrating having to dip in and out, as you say. I have so many things I would like to be getting on with but I can’t because I’m too ill at the moment. But – of course – if we weren’t ill, then we probably wouldn’t be doing this because we would have completely different lives. And thereby hangs the conundrum – that the people who are trying to bring about change for ME/CFS patients are – people with ME/CFS themselves who are therefore too ill to campaign.

I’m still working on how to break that vicious circle and I know that you will be too. I wish you all the best and thank you for your support. I send mine back to you 🙂

Hi Valerie – I have just read your (alarming ) blog with regard to the clinical hypothermia. I’m sure I’m late to the party to suggest this, but, as a fellow ME sufferer…….

Have you looked into the thyroid function/body temperature connection, as low body temp is a classic symptom of hypothyroidism? Even if you’ve had bloods done, which are ‘fine’ (ha ha), you could have a form of thyroid resistance, sometimes referred to as secondary hypothyroidism, as I have, and improve on T3 medication (as opposed to T3&T4 combined which is usually given).

You may well have already crossed this off your list, but thought I’d mention it just in case! Good luck with your onward journey!

I have been tested several times for thyroid function (both NHS and private) and the results seemed “normal”. As we know, that doesn’t necessarily mean that everything IS normal at all but the private doctor was thorough and sympathetic to my situation so I didn’t feel able to take it much further.

Obviously, something is causing the problem but – as is always the case with this appalling illness – it’s multi-systemic, complex and well-hidden. That’s no excuse for where we are at the moment but I think it’s one of the reasons why the medical profession worldwide has been able to avoid addressing our condition – and getting away with it for so long.

I did think you would have been tested, and whilst I in no way think that the thyroid is the root cause of my illness, the fact that I cant utilise the hormone it makes does cause me a myriad of symptoms, a lot of which overlap with ME, and which I have been able to improve.

Not to mention, of course, that nothing in the body works as it should (including all the feedback systems that moderate all the body’s responses to all stressors of course!).

The state of secondary hypothyroidism is not recognised by the allopathic medical community in general, so unless your private doctor was one of the rare ones who are prepared to think outside the box, there’s a good chance he or she wouldn’t have found anything of note?

If you think there’s the slightest possibility of that, I would urge you to read up on it and pursue some treatment on it, as it’s definitely the difference for me between no life and some life!

(Sorry, I’m trying not to sound bossy, but desperate for you not to let doctors dismiss ideas that might still have potential for you, but I’m making a bad job of it because I’m tired!).

I just can’t get past the fact that the thyroid is the main gland for metabolism and therefore, body temperature………

You write: “the name of this illness is hotly disputed.” But it is not. The name of this illness is Myalgic Encephalomyelitis, which is only disputed by those who profit from it being called CFS or ME/CFS. I mean literally, profit. Without “ME/CFS” they would be out of a job.

You go on to say “For the purposes of this blog, I adopt the term “ME/CFS” as my least worst compromise.” I don’t understand why you need to compromise. The name of the illness is… (etc etc) and to mind using the double acronym preferred by the ME-doesn’t-exist-so-treat-it -psychologically PR machine is like doing their propaganda for them. You can almost hear them cheering every time someone says “ME/CFS”.

Ted, if I may comment from “across the pond”, we are all unhappy about the name. I agree, it has been a very profitable and dismissive name. However, it was strongly suggested by the chair of the IOM that we “act up” as the HIV/AIDS community did and please believe me when I say we are taking that as encouragement to do exactly as she recommended. The report also encouraged a review in or before five years have passed. Much of the newest and really important studies were not available to the committee during their year of reviewing the research. There is much to be hopeful for in the near future. In the decades That I have been severely ill with ME, I’ve never seen such a fire storm of interest and real science being widely reported. The JAMA, Science,Wall Street Journal and many media outlets have been steadily reporting on the IOM report, study results and patients personal stories. The research now is open and shared, making it available to other researchers, clinicians and medical schools. I agree, this has been a very long, painful and disgraceful amount of time for us, our families and future patients. I feel blessed to have participated in countless trials and studies. Though we haven’t seen all the embargoed information, I eagerly anticipate every new piece of new information as I believe though it’s been slow going, the pieces of the puzzle are coming together. Without that hope, my life would have no meaning. Be hopeful, there really is much to look forward to as more results become available and new researchers begin new research.

Thank you, thank you , thank you. We are a family of 3 generations with ME. My mother aged 81 now who has had ME for 40 years and her life ruined – and also that of my father as the prime carer. Myself, mild, but still having to manage, and my son who was diagnosed at the age of 12, and is now 23, but with symptoms that are baffling to say the least as he doesn’t now seem to fit into the ‘normal’ ME pattern, but at present is unable to work. It is frustrating that so many years down the line we are still not a lot further forward, however due to people like yourself at least we are now more in the public eye.

From my heart, as a fellow ME sufferer of 20+ years who lives in Australia, I say thank you!! You are able to articulate so well what we all want the medical profession & the world to know about our illness, and how we are mistreated. I just read The Ghost in the Room, regarding Karina Hansen. If only those with any power would take up her cause! I have signed many petitions for her. I feel for you with what this illness has robbed you of. But you are a true warrior (as most of us are) & have continued fighting when you are able. Again, many thanks!

I have been following this unfortunate story and was thankful for your interest in Karina and update. I have been going through my own trials and tribulations, mainly with psychiatrists who are not being at all fair with their written remarks and personal attacks on my integrity, insight and judgement.
I am proceeding to file a complaint with the Human rights Commission here in New Brunswick, Canada, as I believe my situation will only deteriorate as I get older. I have been diagnosed with ME/FM, multiple chemical sensitivities, joint hypermobility and recently, with cardiac pathology that has been linked, with scientific research, to ME.
I have written my story in Judging Judi, available at Lulu.Com, published 3 years ago, but psychiatry is continuing to abuse me and I see no other way to try to stop it, but to complain to Human Rights Commission.

Sorry to hear you have ME. I have read the FTT decision with interest. I have written an analysis piece on it. It is here: http://ewriter.eu/articles/ClinicalTrialData.pdf The views are entirely my own. It seems the case has become quite bloated and if it is to go to the UT then there needs to be focus on just the anonymisation issue. Run properly there are good prospects of overturning the majority FTT decision.

Valerie, I have gone to Hell and back in the last twenty years, Mainly because of the way I have been misdiagnosed and maltreated by psychiatry. I wrote my story in Judging Judi and will have a second edition published by the end of this year. I am enclosing the PDF format of the book, which was censored when I published it first, until I gave enough evidence to the publisher that every word written in it has gone through the courts here in Canada.. Because here in North

America, namely USA, who wants to be different with everything, CFS is used to diagnose many sick patients and then they are considered mind over matter, which is unjust and thoroughly wrong..

Valerie I have found your articles really interesting, helpful and informative. Needless to say I have ME. You have been a source both of information and inspiration Thank you very much for all your work 🙂

Dear Valerie,
In view of the change in the law for consent in March 2015, the recent revelations regarding the lack of statistically significant recovery in the PACE Trial, the mounting research showing exercise intolerance in people with ME and the recent refusal of NICE to change their guidelines any time soon, does the patient community not now have a really strong case to take before the courts?

Thank you for your comments. I’m not in a position to respond to your question here as it would be the subject of several lengthy discussions. I’m aware of all the cases to which you refer.

Briefly – it has ALWAYS been open to ME patients to mount a legal challenge on a number of issues. I do not know why this has not already happened (apart from the obvious limitations of patient resources, both financial and practical). The various charities and groups could have taken this up on behalf of patients a long time ago but, for some reason, have not done so .

The position has probably strengthened a little in recent years, for a variety of reasons. However, the Montgomery case from 2015 that you refer to does not significantly change the existing situation for ME patients on a practical level. It is an important and useful case but it was elevated beyond that by some misleading discussion in the last few months. Our biggest challenge is still the NICE Guidelines.

Valerie, I’ve been an admirer of your comments on Twitter. I’m based in CA and a fellow ME activist. My daughter, age 24, was stricken in 2006. She has been ill over half of her life and her illness has worsened recently. She lives with me and is unable to attend university, or to work or live independently. Not another sob story, just the reality that I live, along with millions of others, and why I am encouraged by the excellence of your advocacy. My comrade-in-arms here on the ME/CFS front is Shari Boxer Baker, a fellow ME/CFS parent. We strongly believe that if the 10+ U.S. nonprofits devoted to ME/CFS will not unite into “the American Heart Association” of ME/CFS and since none of the ten invest in pro-active media relations (for known reasons) to fight the neglect, misunderstanding and patient harm perpetuated by the ignorant, negligent medical community establishment, we should try to fill that gap. Because, as you said so well, we need a new story for ME/CFS. That new story, at least in the U.S., needs to include urgency and massive, sustained campaign focused on the NIH to correct the criminally low level of investment in research. Is there an opportunity for us to set a date/time to speak with you about our ideas and to get your clear-eyed feedback? We’ve spoken already with many of the “usual suspects” in our activist/advocacy world, including David Tuller. When you’re able, please let us know. Hope today is a good one for you. Best regards, Carol Broadbent

Valerie, Thanks for your continuing your work towards improving the lives of many suffering from me/fm/mci. Each person who can make a little progress towards understanding this illness will eventually see the sum total of all our efforts. Keep up the good work!